NFXF, Author at National Fragile X Foundation

Research: Non-Targeted Fragile-X Carrier Testing: Implications for Reproductive Decisions

By NFXF|2017-01-09T11:02:52-05:00Jan 9, 2017|Opportunities for Families, Research|

This study examines women’s experiences with Fragile X carrier screening in the United States. The purpose of our research is to determine how women are being offered carrier screening for Fragile X, when they are offered screening and which healthcare professionals are responsible for returning their results. The study entails interviews with women who have undergone Fragile X carrier screening in the last six months.

MANDT Training Brings Together Families

By NFXF|2017-01-06T13:32:50-05:00Jan 6, 2017|Events, St. Louis|

On December 10, Fragile X Resource Center of Missouri hosted a MANDT training session for local families.

So Much Happened in 2016 Thanks to You!

By NFXF|2017-01-04T15:45:17-05:00Jan 4, 2017|Foundation|

As we begin the new year, we want to take a moment to thank you for your incredible support in 2016! Because of you, we continued our mission to help all families living with Fragile X. Last year, we accomplished more than we could ever list in a single article so we want to share just a few highlights that happened around the nation because of you!

MO: Fragile X Walk

By NFXF|2017-01-03T14:54:41-05:00Jan 3, 2017|Events, St. Louis, St. Louis Events|

Mark your calendars and plan to join Fragile X Resource Center of Missouri for their annual Walk for Knowledge!

University of Alberta: Memory Study in Children/Youth

By NFXF|2016-12-28T11:29:16-05:00Dec 28, 2016|Opportunities for Families, Research|

Researchers at the University of Alberta's Department of Pediatrics and Stollery Hospital are completing a study looking at memory in children with a neurodevelopmental disorder or typical development.

Message from NFXF President: It’s an Honor

By NFXF|2016-12-21T12:03:23-05:00Dec 21, 2016|Annual Fund, Foundation|

Dear Fragile X Community, Sharing my family’s Fragile X story with you through the NFXF Annual Appeal was truly an honor. If you haven’t already, I hope you’ll take a moment to read through it and [...]

Summer Student Fellowship: 2016 Summaries

By NFXF|2016-12-21T09:00:46-05:00Dec 21, 2016|Summer Student Fellowship Reports|

The NFXF Summer Student Fellowship was established to encourage a new generation of Fragile X researchers. By funding young scientists’ research pursuits, we believe that it will continue to push Fragile X into exciting new territory and inspire them to continue important work in this field.

Merchandise Being Sold with Offensive “R-Word” Language

By NFXF|2016-12-13T11:16:44-05:00Dec 13, 2016|Action Alert, Advocacy|

We are incredibly proud of the swift action taken by members of our community, after discovering offensive items for sale on a few major retailers' websites. We stand with you.

21st Century Cures Act Demonstrates Bi-Partisan Spirit

By NFXF|2016-12-09T09:24:01-05:00Dec 9, 2016|Annoucements, Foundation|

Closely following its passage (392-26 on Nov. 30) in the House of Representatives, the U.S. Senate took up the 21st Century Cures Act and enacted the law by an equally impressive margin (94-5) vote. The law’s next stop is President Obama’s desk, and the President has already made clear his support for the bill and his intent to sign it. Passage will mean nearly $5 billion of new funding for the National Institutes of Health (NIH) and $500 million for the Food and Drug Administration (FDA), along with a plethora of policy provisions that will bolster medical research.

We Rock The Spectrum Family Day

By NFXF|2016-12-09T09:09:08-05:00Dec 9, 2016|Community Support Network, St. Louis, St. Louis Events|

[mpc_image preset="preset_2" image="26090" margin_divider="true" margin_css="margin-bottom:15px;" image_size="700_thumb" image_opacity="100" effect="none" image_hover_opacity="100" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="1200" animation_in_delay="600"]On Sunday, December 4 the Fragile X Resource Center of Missouri hosted an afternoon full of ziplining, bouncing, painting, swinging and dressing up [...]

Double Your Giving. Increase Your Impact.

By NFXF|2016-12-07T12:43:37-05:00Dec 7, 2016|Annual Fund|

[mpc_image preset="preset_2" image="25446" margin_divider="true" margin_css="margin-bottom:15px;" image_size="700_thumb" image_opacity="100" effect="none" image_hover_opacity="100" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="1200" animation_in_delay="600"]Our annual year-end appeal is underway, and we’re grateful for the generous support during our most important campaign of the year! Your [...]

Fragile X and Hyperarousal Educational Conference

By NFXF|2016-11-18T13:15:25-05:00Nov 18, 2016|Central Arkansas, Events|

On Saturday, October 29th, Fragile X of Central Arkansas hosted renowned speakers and therapists, Tracy Stackhouse and Sarah "Mouse" Scharfenaker for an educational conference, open to all families.

Annual Appeal

By NFXF|2016-11-16T10:51:52-05:00Nov 16, 2016|Annual Fund|

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11th Annual Mouse Races with Fragile X Resource Center of Missouri

By NFXF|2016-10-21T14:33:19-04:00Oct 21, 2016|Events, St. Louis Events|

Flags were flying and the crowds were jumping as (contained) mice ran their races at the 11th Annual Mouse Races to Support the Fragile X Resource Center of Missouri.

Language Challenges and Language Possibilities for Fragile X Syndrome

By NFXF|2016-10-19T10:25:44-04:00Oct 19, 2016|Research|

Language is critical in much of daily life. Making friends, learning in school and holding down a job, all require language. For people with more limited language, like so many with Fragile X syndrome (FXS), researchers and clinicians are trying to figure out ways of improving language so that inclusion in more of life’s activities will be possible.

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